THE FACE OF AUTISM

Families relate struggles, accomplishments

Jay McFarland had big dreams for his little boy. An avid golfer, he imagined a lot of father-son time on the fairways.

“I could teach a kid to play really good golf,” he remembers thinking. “I’m going to start him hitting balls when he’s 3.”

That was before he and his wife, Siti, learned that Liam was autistic. Similar to so many parents, McFarland was deflated with the diagnosis of a developmental disorder.

“For a while, I have to admit, I was pretty bummed out,” says McFarland, an executive recruiter who lives in Cary.

“That was kind of stupid in retrospect,” he admits. “Then I started thinking, Liam is a really good kid, and it could be a lot worse. Those are the cards you were dealt, so deal with it.”

Today, Liam is a well-adjusted nine-year-old and attends Mills Park Elementary School. With specialized instruction, he continues to grow in ways that his parents find rewarding. Of course, these milestones often are simple ones. If his parents pay him a compliment on having a good day at school, they are content with his smile and a few mimicked words in response.

A challenging road

Autism is a spectrum disorder characterized by impairments of communication and social interaction. Delays in spoken language and a lack of interest in peer relationships are among the symptoms that become evident during a child’s first three years. Behavior therapy and structured teaching can help autistic people improve functional independence.

Still, there are many challenges for parents and caregivers of autistic children. Because people with autism display different combinations of intelligence, vocabulary and behavior, each scenario is unique.

Scott Badesch and his wife have four children, including 22-year-old son Evan, who has Asperger Syndrome, an autism spectrum disorder. Evan has the developmental skills to live on his own in Orlando, even as his parents live in Raleigh. And while Badesch is proud of his son’s independence, his concerns go beyond his family. He is CEO of the Autism Society of North Carolina (ASNC).

“We work with adults and caregivers or parents on how to prepare for the next stage of that person’s life,” says Badesch, who leads an organization of more than 700 staff members statewide.

When he took the job last year after 24 years with United Way, Badesch was faced with long-term challenges that have no easy solutions.

“If you ask any parent of a child over 18 who is autistic, their No. 1 concern will be, ‘What will happen when I’m gone?’ ” he says.

“The problem is, there are very few group homes for people with autism,” Badesch adds. “The issue is that residential housing has a very high price tag. There’s not a lot of models that work financially. Even with financial planning, the odds are that very few people will have the income to fully afford a private setting.”

ASNC has a $14 million annual budget and operates a camp in Pittsboro, as well as day and residential programs. But the reality is that state funding goes only so far. Some adults with autism wind up in nursing homes, institutional settings or become homeless, “all of which have a higher cost to society in dollars than the most expensive housing,” Badesch notes.

Expecting the unexpected

Parents face several important transitional periods with autistic children as they grow through childhood, school, adulthood and older age. They also deal with a range of unconventional behaviors, some of which can keep parents on their toes.

Susanne Harris recalls her son Matthew’s habit of slipping away from their Durham home. From time to time, he would wander over to the neighbor’s house and indulge in his love of fresh fruit.

“He’d go over and help himself on occasion,” Harris says with a chuckle.

“He’d go through their garage and into their kitchen,” she adds. “He’d eat a couple pieces of fruit and then he’d leave. And the lady would call and say, ‘I can tell Matthew has been here. We have a couple peaches with bites out of them.’ ”

Harris takes pleasure in recounting Matthew’s adventures. As she sees it, there is no other way.

“If you don’t, then they’re going to come and cart you away,” she says.

Harris has traveled a difficult road. Her husband died nine years ago, and she has raised Matthew with help from her parents and two siblings. Matthew is now 17 and living in a group home. But Harris’ work is not finished. She is president of ASNC’s Durham chapter and performs advocacy work for other families with autism.

“Until every child gets all the services they need, we’re not satisfied,” says Harris, who also works full-time for the Duke University Center for the Study of Aging and Human Development.

She knows the importance of connecting families with programs that benefit autistic kids, as she discovered firsthand with therapeutic horseback riding.

“Matthew gets up on the horse, and he’s a whole different child when he interacts with this horse,” she says. “He loves him. They’ve taught him to brush the horse, and they’re teaching him to feed and care for him. It’s just wonderful.”

Celebrating successes

As autistic children navigate the path to personal growth and increased independence, parents typically find satisfaction in the same joys as other parents. But sometimes, they have to view them in a different light.

“There is a simplicity of understanding and appreciation of a person with autism that is beautiful,” Badesch says. “I’ve learned more from my son than I’ve ever taught him.”

With a few years of parenting under his belt, McFarland hasn’t given up his dream of enjoying golf with his son. Liam might never tee off with his dad, but he has designs on a driver of a different sort.

“I haven’t taken him on the course yet, but he loves to ride on the golf cart,” McFarland says.

“I was always worried that if we were on the driving range, he would wander behind somebody. But at some point we’re going to do that because he loves to ride around on the golf cart.”

As McFarland has learned, there is plenty of joy in the little things. All it takes is a good cart partner.

“Try to be happy with what you have,” he suggests.

“There are certain talents people have, and certain talents they don’t. When you figure it out, be happy with it.”

Kurt Dusterberg is a freelance writer based in Apex.

To learn more

North Carolina — and the Triangle in particular — has several valuable resources available to families living with autism.